Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Multiple Myeloma

AVR1962

By AVR1962
in Related Issues & Disorders

Recommended Posts

AVR1962 Collaborator
AVR1962
Posted

My grandmother has been diagnosed with multiple myeloma. As I am reading thru the information everything sounds like my own health except my calcium level did go down when I went on a gluten-free diet. I am planning on asking my doctor to test me for my own peace of mind. However, I was wondering if anyone knows about multiple myeloma and knows if there is a connection to celiac?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

There are a few articles I have seen discussing MM and celiac as I was researching it for a friend years ago who had MM--just google it and see what you find.

ETA: Research articles like Pub Med.

Honestly, though, almost ANY AI disease could have a potential

link to celiac and having celiac disease is not necessarily a pre-determinating factor that you will develop it. I have seen articles while researching celiac disease for 4 years suggesting a link to nearly every disorder under the sun. :unsure:

cyberprof Enthusiast
cyberprof
Posted

My grandmother has been diagnosed with multiple myeloma. As I am reading thru the information everything sounds like my own health except my calcium level did go down when I went on a gluten-free diet. I am planning on asking my doctor to test me for my own peace of mind. However, I was wondering if anyone knows about multiple myeloma and knows if there is a connection to celiac?

Yes, there is some connection. Not all celiacs get MM (multiple myeloma) and not all MM patients are celiac but there may be a link. I've posted on it a lot here...do a search for the official PubMed type articles that I researched.

****Important***** You should tell your grandmother to get tested for celiac.

The most telling article was the observation that on a gluten-free diet, some (but not all) MM patients will go into remission. My hubby has indolent (dormant) MM and he is on a gluten-free diet and his blood work has been steady for 5+ years.

cyberprof Enthusiast
cyberprof
Posted

Here's the link that I posted that has a lot of articles and information.

Also, MM is not a death sentence as it was 10 years ago when my husband was diagnosed. Treatments are much better.

AVR1962 Collaborator
AVR1962
Posted
  • Author

Yes, there is some connection. Not all celiacs get MM (multiple myeloma) and not all MM patients are celiac but there may be a link. I've posted on it a lot here...do a search for the official PubMed type articles that I researched.

****Important***** You should tell your grandmother to get tested for celiac.

The most telling article was the observation that on a gluten-free diet, some (but not all) MM patients will go into remission. My hubby has indolent (dormant) MM and he is on a gluten-free diet and his blood work has been steady for 5+ years.

Thank you, and IrishHeart, for your replies. I will check out those links. The real bad thing about all this with my family is they almost think celiac and wheat intolerence is a joke. Family members have made posts on FB about thinking they might have gluten intolerence and then realized they were just fat. I have had some tell me that they heard a speaker on the radio and how all my symtoms sounded just like what they were talking about but it doesn't get thru to them that others in the family may also be effected. My dad has arthritis and I found an article stating wheat causes inflammation in arthritis and sent it to him. He said he cut enough out of his diet and if he beleived evrything he read he would have nothing to eat. When my Gma first went into the hospital one of my adult daughters was with her and docs before they started testing. My daughter asked docs to test her for celiac. As soon as my mom heard this she rolled her eyes. The doc agreed to test but I never heard the results. I did hear there was intestinal damage but no one seems to be paying attention to that.

My Gpa died just a year ago and when he was sick but had not found out yet what it was that was cauing the problems he was dizzy all the time, probably the last 2 years of his life. Oddly, then when I got sick I too was dizzy for 9 months, every day all day and it stayed that way until I was able to get a grip on gluten-free diet. When I finally did, it was a matter of 4 weeks off gluten and my dizziness stopped. My family knows this but I don't think they made the connection to Gpa. My adult daughters and grandchildren are on gluten-free diets, even their husband are on gluten-free diets and all doing so much better. I quite honestly feel celiac runs thru my whole family. I went to a family reunion this summer and as my family members were eating at our planned picnic I was just watching in disbelief as what appeared to me as my family membrs killing themselves on gluten. If I tell my story to my family, they will say things like, "I am sure glad I don't have that problem." They do not listen so I gave up.

IrishHeart Veteran
IrishHeart
Posted

I am in the same boat, hon. :(

Try repeatedly to get family members to see it is hereditary.

Try to get them to see that all of their AI diseases (thyroid, diabetes, cancer, asthma, arthritis, MS, Crohn's, gall bladder --no one has one of those left--anemia)and various health issues (obesity, depression , anxiety) are relevant. It is gluten, people! :rolleyes:

They think I am the only with it!

I say..."No, I am just the FIRST ONE TO BE DXed with it." This is genetic!

My Mom (age 85) is the only one to listen. She went gluten-free and feels great. Sadly, it is too late for my Dad. I see now that all of his health problems screamed celiac. Ironically, while he was dying is when mine triggered for good and caused massive complications for 3 years and nearly killed me.

We can inform them all---but we cannot make them do it. I think one has to be as sick as we were to "get it".

AVR1962 Collaborator
AVR1962
Posted
  • Author

I am in the same boat, hon. :(

Try repeatedly to get family members to see it is hereditary.

Try to get them to see that all of their AI diseases (thyroid, diabetes, cancer, asthma, arthritis, MS, Crohn's, gall bladder --no one has one of those left--anemia)and various health issues (obesity, depression , anxiety) are relevant. It is gluten, people! :rolleyes:

They think I am the only with it!

I say..."No, I am just the FIRST ONE TO BE DXed with it." This is genetic!

My Mom (age 85) is the only one to listen. She went gluten-free and feels great. Sadly, it is too late for my Dad. I see now that all of his health problems screamed celiac. Ironically, while he was dying is when mine triggered for good and caused massive complications for 3 years and nearly killed me.

We can inform them all---but we cannot make them do it. I think one has to be as sick as we were to "get it".

Sad, isn't it IrishHeart! My mom got so upset with family this past year for trying to help my Gma with vits and supplements, she has been slowly losing her health since Gpa passed. She told me that vits and supplements were nothing but JUNK, caps in her email! Thank goodness for herbs and vits and homeopathic thinking as medicine just does not cut it sometimes. At this point docs are now saying that if Gma is released from the hospital she is going to have to go into a nursing home. So so sad. So much could be prevented if one would just open their mind to the possibilities.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 1 month later...
beachbirdie Contributor
beachbirdie
Posted

...The doc agreed to test but I never heard the results. I did hear there was intestinal damage but no one seems to be paying attention to that...

Blood testing may not be useful when multiple myeloma is involved. MM can depress the immunoglobulins, as I just found out with my mother. She is very low in serum totals of both IgG and IgA, which renders any celiac testing invalid.

If your gma had a positive biopsy, she should be gluten-free. As the study says (the one quoted on this site), 30 or 33% of people with MGUS (monoclonal gammopathy, may have celiac. That's pretty significant!

Good luck...

AVR1962 Collaborator
AVR1962
Posted
  • Author

Blood testing may not be useful when multiple myeloma is involved. MM can depress the immunoglobulins, as I just found out with my mother. She is very low in serum totals of both IgG and IgA, which renders any celiac testing invalid.

If your gma had a positive biopsy, she should be gluten-free. As the study says (the one quoted on this site), 30 or 33% of people with MGUS (monoclonal gammopathy, may have celiac. That's pretty significant!

Good luck...

Thank you for your reply. My grandmother's situation was too progressed, she passed 2 weeks ago. My doc said that it can run in families and did test me, still waiting for the results.

cyberprof Enthusiast
cyberprof
Posted

Thank you for your reply. My grandmother's situation was too progressed, she passed 2 weeks ago. My doc said that it can run in families and did test me, still waiting for the results.

I'm so sorry AVR. I hope your tests are negative!

beachbirdie Contributor
beachbirdie
Posted

Thank you for your reply. My grandmother's situation was too progressed, she passed 2 weeks ago. My doc said that it can run in families and did test me, still waiting for the results.

I'm so very sorry for your loss. I hope you receive comforting information from your own tests.

AVR1962 Collaborator
AVR1962
Posted
  • Author

I'm so very sorry for your loss. I hope you receive comforting information from your own tests.

Thank you so much!

  • 1 month later...
kendick Newbie
kendick
Posted

I am a two year multiple myloma survivor. I have just been diagnosed with celiac desease. I was told there is a connection. BUT, my oncologist said maybe celiac is responsible for the cancer, but not the cancer responsible for celiac! Who knows for sure, but it looks like maybe there is a connection......

AVR1962 Collaborator
AVR1962
Posted
  • Author

I am a two year multiple myloma survivor. I have just been diagnosed with celiac desease. I was told there is a connection. BUT, my oncologist said maybe celiac is responsible for the cancer, but not the cancer responsible for celiac! Who knows for sure, but it looks like maybe there is a connection......

Congratulations to you for kicking multiple myeloma! Docs did test me and reults were negative. I wish you the best in continued good health!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.